Friday, 6 November 2015

I’m currently writing this 35,000ft over the Atlantic,
according to the flight path we are flying over Porcupine Plain (who comes up
with these names?!). We have 6 hours 13 minutes left before we land in Orlando
and we are travelling at 563mph. So that’s the interesting stuff done with! (Technically as I'm posting this I am now sunning myself in our very own private villa, it's about 32 degrees and not even lunchtime yet! Such a tease aren't I whilst you all endure the UK winter)

The last month or so feels like I’ve been at the fairground
and struggling to get off the Ferris wheel. It’s been a constant cycle of drama
that I just can’t seem to shrug off. Take me back to the normal days when I
could just get through the day without ending up at A&E; or seeing some
kind of health professional; or seeing more blood than I should ever see in my
lifetime let alone in 6 weeks. I feel since I started this blog that I have had
more drama than normal and there was me worrying that I wouldn’t have enough to
write about! I hope I haven’t jinxed myself by starting this blog that now my
life feels to take on more drama.

I have come to realise since having PH that normal stuff
that had no negative effect on me before seems to these days cause me so many
more complications. I have always been allergic to penicillin since I was
little but as I am on sildenafil for my PH (more commonly known as the little
blue pill, Viagra) it turns out it doesn’t like me to be on any other
antibiotics. So after I had the flu and pneumonia jab I noticed my arm was
starting to really ache and Icould barely move
it, 24 hours later I ended up in out of hours surgery to be told I had an
infection from the jab and needed to be prescribed antibiotics. I wished the
doctor luck with this as I knew this wasn’t an easy task to do!

Last year I had my wisdom teeth out and got a really bad
infection and at that time they prescribed me erythromycin which I quickly
learnt I was allergic to. So knowing I had limited options she suggested a
tablet, doxycycline. I must admit in the last 18 months I have become very
weary of any medical professional who don’t know about PH. Not because I don’t
value their opinion, but as it is such a rare, unknown disease, I don’t need
anymore added complications thrown in by someone treating me who doesn’t
understand my condition. You probably think I sound like a right spoilt brat,
“oh she won’t be treated by me as I’m not good enough for her” but at the best
of times I struggle to have little control of my PH that to add someone in who
isn’t an expert in it just makes me question them. Anyway I digress as always!
So I waited to take my prescription until I had phoned my pharmacist at
Sheffield just to check that I was always ok to take this. He confirmed I was
fine to take it and that it shouldn’t interact with my PH medication. I take it
and 48 hours later having not stopped being sick from the tablet I ended up
back in A&E, this time the infection had
turned into cellulitis. Turns out I’m also now allergic to doxycycline! Told
you more drama! My arm was badly swollen, ridiculously hot and I was in a lot
of pain with it. So the hospital started me on IV treatment for 4 days and then
a course of oral tablets 12 a day for a week. Pleased to say the IV worked and
now the infection has disappeared.

Me whilst on IV drug. The squiggly line shoes where the infection was spreading.

It was during this week in hospital that it was my PH friend
Sarah’s funeral. I had hoped to make it but due to issues internally at the
hospital I didn’t make it so my dad went in my place. He brought me the order
of service back to me at the hospital and even though I wasn’t there it was
nice to read the programme and feel like I was there in spirit. There was a
reading at the back of it which hit a chord with me. It reminded me life can be
so short, whether short or long, you must live it. I’ve copied below as it
summed up Sarah’s attitude to life and one that I think since being diagnosed
with PH that I follow the same mantra.

The Dash

I read of a man who stood to speak at the
funeral of a friend.

He referred to the dates on her tombstone
from the beginning to the end.

He noted that first came the date of her
birth

and spoke the following date with tears,

But he said what mattered most of all was
the dash between those years.

For that dash represents all the time
that she spent alive on earth

And now only those who loved her know
what that little line is worth.

For it matters not how much we own, the
cars, the house, the cash.

What matters is how we live and love and
how we spend our dash.

So think about this long and hard; are
there things you’d like to change?

For you never know how much time is left
that can still be rearranged.

If we could just slow down enough to
consider what’s true and real

And always try to understand the way
other people feel.

And be less quick to anger and show
appreciation more

And love the people in our lives like
we’ve never loved before.

If we treat each other with respect and
more often wear a smile.

Remembering that this special dash might
only last a little while.

So when your eulogy is being read with
your life’s actions to rehash

Would you be proud of the things they say
about how you spent your dash?

This reading really resonates with me. I have always been a magpie as Andy will
confirm, loving everything sparkly and shiny that I can get my hands on! But
since being diagnosed it’s only now I realise how much before I used to take my
health for granted. I always thought I would be like everyone else, be able to
have my own family, become a Grandma, live to be old age with Andy, we would be
the old couple at the beach holding hands eating our fish and chips (gluten
free of course) and if I was to get ill it would be when I was old and grey not
still in my early 30s.

Whether you have an illness or you drop dead tomorrow with
no warning you need to live life as though today is the last. Don’t have any
regrets. Make up with people you fall out with. Have a smile on your face even
when life takes you through the shit times. Most of us who will read this live
in a far better place than other people we see on the tele most days, who are
fleeing from their countries due to poverty, rape, war, terrorists. Whilst we
all have our own bad days and worries, you only get one life.

About Me

Hi, my name is Gemsy and I'm trying to raise awareness about a rare heart and lung condition I have called Pulmonary Hypertension. This is my story on how living with an incurable lung and heart disease affects me.